Angelman Syndrome

Lindsey, today I thought to ask Nate's PT if she saw any kids with Angelman Syndrome, and she said she has a very little one that she's pretty sure has it and hopes the mom can get a diagnosis soon. The mom keeps asking if he child will walk, and the PT says Angelman would actually be a good diagnosis to give her hope for that, even if it's years from now? Anyway, I mentioned the therapy that you do, and she seemed to be familiar with it, but I've known her to act like that before even if she has no clue, lol. Just thought I'd mention it.

Comments (12)

interesting!
It depends on the severity of his case. A.S. is basically a mutation, partial deletion or complete deletion of a maternal chromosome in the child's brain. Obviously complete deletion is the most severe and mutation is the least severe. It is a large spectrum. Although most children will eventually learn to walk at least partially, some will not. But it often takes a long time and plenty of OT for them to begin to take steps.
Does he suffer from seizures? Almost ALL A.S. children suffer from seizures for part or all of their life. Often they don't begin until the child is a couple years old.
I know there are not any therapists in her area because all of the therapist in the nation are connected to my boss and there are very few. How old is he?

This is very interesting (had to do a search on Alphabet therapy since I had never heard of it), I will have to pass it on to my cousin. I so wish she has internet. She has two children with Angelman (inherited from her), one is 7 and one is 2. I always think it is so weird that we both are carriers of something and both have two children with disabilities.
Gayla

Hey ladies, I just wanted to leave a comment cause i found your conversation very interesting. I have a 6 year old son named Tanner who is deletion positive. Love any therapy info ya'll have and questions are welcome. Always wanting to learn and always willing to help.

Hi! I just found this group. I have been a member of delayed darlings for a while now. Emma is my 21 month old with AS. We actually just got back from an alphebet therapy workshop. It was great! I have had a few sessions with Emma and she can already identify the color red- 90 percent of the time! I am very excited about the potential to teach Emma! I would love to hear more about any therapy info you have!

Hey ladies. I'm sorry to bother but I have a question. I have a six month old that I worry may have AS. He's not babbling. He's just saying 'aaaaaaaaaaa' all day. He's sitting and about to start crawling. He's very excitable ALl the time and always waving arms and legs out straight. He picks up food with his hands already and eats it but when I sit him in a chair he arches after a minute and then arches in my arms and I'm afraid it's a seizure. He also is extremely fair skinned whereas my daughter is very dark. I know it's not a lot to go by but I worry every second! What were your babies like at 6 months? Thank you so very much